HELP PARKER (aka SPARKY) OUT-CLIMB LYME

Dear Friends and Family,

There's a few people out there who truly understand how Lyme has impacted our family. Christine Lindberg is one such person. A few months ago, I (Graham) shared with her how overwhelming the financial struggle is. A few weeks later, she informed us that she would launch a fundraiser to help us with Parker's ongoing and past medical expenses. It took me two months to actually give her permission to do this - my wife Shannon and I find it horribly scary to publicly acknowledge our need and ask for help. If you can make a donation - awesome and thank you from the bottom of our hearts! Make sure to SHARE Parker's story via this fundraiser on your FB wall and/or via email. Please be informed about Lyme Disease - we do not want Lyme to impact your family the way it has ours. (Canlyme.com or ILADS.org)

Thank you very much to those who have already stepped forward to help Parker out-climb Lyme. We solidly believe that Parker's 9 month remission (May 2014 to January 2015) is a clear indication that he can beat Lyme! Last summer, after years of being wheelchair bound, we felt like we were witness to a miracle each time he conquered a new mountain top or ripped single track down trails all over the lower mainland.  He is fighting hard to get back on top. By way of donating you are being the hands reaching out to pull him up and the feet to journey alongside of him as he sets out to out-climb lyme once and for all. 

CLICK HERE TO HELP PARKER OUT-CLIMB LYME.


Please say NO to Lyme and Yes to Parker!

Love,
Graham Goertzen & family

Parker - Summer 2014
The Stawamus Chief, Second Peak, Squamish, BC

The following is a note from Christine Lindberg, the organizer behind this fundraising endeavour for our son, Parker aka Sparky.

Dear Friends and Family of the Goertzen Family,

My name is Christine Lindberg and I am writing this as a concerned friend of this beloved family.

This week, I launched a fundraising site at youcaring called, "HELP PARKER GOERTZEN OUT-CLIMB LYME", in order to raise much needed funds for their son, Parker's medical treatments.

The Goertzen family is so grateful for the support of many over these long years of illness and suffering. I know that many of you have watched them endure this fight for so long and you have faithfully persevered in prayer for them. As their community you have ridden the emotional highs and lows of this journey with them; celebrated the victories along the way and cried out and pleaded for mercy on their behalf inthe deepest depths of their suffering. Quite possibley, you may be feeling discouraged, uncertain or even somewhat complacent about their battle against Lyme. I know many of us have often felt like helpless spectators on the sidelines, not knowing what else to do or how to help. 

Well, this fundraiser is a way to be there for them in a very tangible and crucial way!

Our family is asking you to join us in donating money that will be used to help Parker fight his recent relapse in his very long battle with Lyme disease. Currently, it is taking $3,000 per month just to keep Parker from further decline - they need help to continue this plus explore other options that their medical team wants to implement in order to move Parker from 'survival mode" into a sustained recovery and healing.

Is healing from Lyme disease even possible?
The answer is YES! 

Parker - Summer 2014
Train Wreck Trail, Whistler, BC

As a mom of a son who endured the agony of Lyme Disease for years on end - but who now has before me a thriving, healthy and healed son, I can say the answer is YES! A resounding YES!  

Our family went through this battle for years, I can assure you that we were able to "leave no stone unturned" in seeking medical treatment options for our son Riley because of the financial support of our community. I will forever be grateful for the people in our lives who supported our family in such a tangible and real way...even when there seemed to be no end in sight.

Parker - Summer 2014
Lynne Valley Peak, North Van, BC

Please stand with us and say NO to Lyme and YES to Parker. Though the climb has been long and arduous, the reality is there is so much hope. Parker out-climbed lyme before and we believe wholeheartedly that restoration and a sustained recovery and healing is fully within his reach. There is hope that Parker can out-climb lyme once and for all and be able to thrive and lead the life he is called to - with joy and abundance.

The bottom line is that they need our help to leave no stone unturned. It has taken them a long time to agree to this fundraiser - as they are not the type to ask for help. They are incredible human beings who give so much to others - Let's shower them with love and financial support. 

Please click HERE to follow the link to complete details of the 

HELP PARKER OUT-CLIMB LYME fundraiser

If you have any questions or can help spread the word, please do not hesitate to contact me, Christine at cklind47@gmail.com!

On behalf of Graham, Shannon, Taylor, Parker, Avery and, of course, Harrison, I thank you in advance for your consideration and support!

Christine Lindberg and family

THE PRETTY PILL PROTOCOL (& mini-update on LDI IMMUNOTHERAPY)

parker started a new protocol this week. we're calling it the pretty pill protocol because, well, the pills are pretty. it is called Sporanox. There is always anxiety about starting or adding any new med into treatment because often symptoms get a lot worse before they get better. as purdy as these pills look, they look extra scary for a few reasons.

first, because he's never been on them before so we have no idea how his body will react. second, his doctor is using these pills as part of a protocol to target mycotoxin issues in his brain, sinuses and lungs. treating these can be tricky and we know the die-off (herxing) could be intense.

i'm posting about this because i would love to get feedback from any other lyme or mold or biotoxin illness warriors out there that have 'been there, done that'.

speaking of been there, done that - 

i am working on a post to update you all on Parker's LDI Immunotherapy . he began this treatment therapy about 11 weeks ago now. i posted about it here. i have had a few emails and inquiries from folks asking how things are progressing on this treatment. i am so sorry that i have been slow to respond to inquiries and in posting an update! i know there are many people in the Lyme community researching this treatment and anxiously waiting to hear if it is working for those that are undergoing it.


here's the reason for the delay - parker had a very severe flare and got very ill within 24 hours of receiving his first dose of LDI. he was essentially bed ridden for the six weeks following his first dose. his medical team was baffled by his intense response as he was given the minutest dose. the tricky thing has been trying to figure out if the LDI Immunotherapy was just a contributing factor or the cause of his flare. i haven't wanted to post an update until i felt like we had a clearer understanding of where things sat with this therapy or even if his medical team would continue to utilize this treatment for him. 

at this point, his medical team believes the LDI contributed to the downward turn in his condition but (as per usual with lyme), there are about a million and one variables that may or may not have made things worse for him! we are still sifting thru all the 'rubble' but DR H did feel it was important and vital for him to continue with LDI Immunotherapy. so he received his second dose about 3 weeks ago. he did have a flare of symptoms again - but it was less intense and only lasted about a week. the past two weeks have been a bit better for him. we are hopeful this is a good sign that his body is having a favorable response to the LDI. albeit, now that he's feeling a bit better it makes starting the pretty pill protocol a whole lot less appealing - especially considering dem purdy pills could make him feel less than stellar.

 i promise i will be posting a more detailed and specific post of his journey with LDI in the coming weeks and months - just waiting til he's had a few weeks under his belt with this second dose in his system to render any judgements or opinions on this treatment protocol!

RIDE FOR PARKER (aka SPARKY)

If you haven't already heard about Daniel and Tanner and the 8,000km cross Canada bike ride they are doing to raise awareness and funding for Lyme Disease then please visit their website (Learn more about the mission of Ride for Lyme at Rideforlyme.ca or visit their Facebook page RideforLyme) 

Each day of their 2 month journey across Canada, they dedicate that day's leg of the journey to a Canadian Lyme patient. They call it a "daily ride dedication" and they post it on their facebook wall along with a little write up about the person. 

Today, they will be riding from Atitokan to Shebandewan, ON and are riding in honor of our son, Parker. It is hard to find the words to express the gratitude we have and how incredibly moved we are to have our Sparky's story and fight honored in this inspiring way.

This Ride for Lyme Daily Ride Dedication is for Parker - affectionately nick-named "Sparky". 

When the shadow of Lyme fell upon Parker's life in September 2009, he was a little boy of nine. When he finally emerged from those shadow-lands in May 2014, he was a young man of fourteen. He experienced 7 glorious months of remission. Then, in January 2015, Lyme returned with a fury; once again casting its ugly, all-consuming shadow upon his life. 

He has now been essentially bedridden since March 2015. His days are pain-filled, long and isolating but he is not one to complain or be bitter. His sweet smile is always accompanied by a positive or witty remark and he gives the best. hugs. ever. Yet his grief & loneliness over being cut off from life again and deep discouragement over being back in a place of great suffering are palpable. 

His recent relapse has been a gutting and devastating blow for our entire family. Hopelessness is a pervasive feeling we daily struggle with. Yet we solidly believe this: there is a road out of this disease and into remission for every person fighting Lyme. We found Parker's way out once and we hold on to the hope that we will find it again. Healing is possible!

Hope in front of Parker. Hope is in front of each of us.

Parker on the beach in Santa Cruz, CA during a visit to his Lyme doctor (LLMD) in January 2014. At the time, we had been flying to California to see his LLMD every three to four months since December of 2009. This was the FIRST trip he ever made without his wheelchair in all those years. This trip was significant - we could see that he was finally emerging from the shadow-land of Lyme.

THE DESCENT 
Sept 2009 to Dec 2009 

Our Sparky boy, September 2009

Parker went from healthy and active to wheelchair-bound in six weeks. Over the following 3 months, he was seen by countless specialists, underwent a multitude of tests and was hospitalized numerous times at BC Children's Hospital. No one could figure out what was making him so sick. He had 60 of the 75 symptoms of Lyme, yet doctors refused to consider Lyme. In fact, a BCCH Rheumatologist told us, "It is impossible to get Lyme in BC."

THE MISDIAGNOSIS

He was released from a week long hospitilization with a diagnosis of Idiopathic Pain Syndrome and Movement Disorder. The treatment plan included physiotherapy, pain management, psychology and antidepressants. He did not improve at all. In fact, he deteriorated further. 

Our Sparky boy lost his spark. 

Dad had to take a leave of absence from work in order to help care for him. There were many sleepless nights. We began questioning his diagnosis. Research always led us back to Lyme. Combing through his medical files, we discovered a positive lab result for an infection associated with Lyme. this was news to us. We had been told by Infectious Disease doctors in the hospital there was no evidence of infection. Shortly after this discovery, we made an appointment for Parker to be evaluated by a leading Lyme doctor in the USA.

THE DIAGNOSIS
Dec 2009

Doctor's notes 

By the time he was finally diagnosed with Lyme, Babesia and Bartonella in December 2009 by a Lyme doctor (LLMD) in California, he was an emaciated shell of his former vibrant self. He could no longer walk, feed or clothe himself. 

Skeletal and covered in rashes

The delay in diagnosis meant Parker's infections were deeply entrenched and life-threatening. His USA LLMD started him on aggressive antibiotic treatment immediately and told us to prepare for a long and brutal fight.  

THE COST OF IGNORANCE 


With a lab-confirmed diagnosis and treatment plan in hand, we returned to Canada with high hopes Canadian doctors would partner with his USA LLMD to provide treatment. This did NOT happen. BCCH doctors harshly criticized his diagnosis, scoffed at his positive blood test for Lyme, and refused to work with his USA LLMD.

Parker, February 2010

Parker was abandoned by our health care system.

The ignorance of lyme in BC and systemic bias against treating it in Canada nearly cost our son his life. It cost us too; physically, emotionally and financially. For the next 5 years, his medical treatment was under the care of his USA LLMD - and paid for out-of-pocket by us.


THE VALLEY OF THE SHADOW
Dec 2009 to Oct 2013

Parker with his Second of Three PICC Lines,  February 2012, Seattle, WA

It has been said that fighting Lyme is a marathon battle of one step forward and two steps back. This was very much the case for Parker. The years of treatment that followed his diagnosis were a marathon of setbacks; debilitating fatigue, unremitting joint pain, cognitive decline, hallucinations, seizure like tremors, migraines, sound and light sensitivity etc. During this time frame, we often felt like we were living in the valley of the shadow of death. Our Sparky boy could rarely walk independently and was too ill to go to school or play with friends. His childhood was consumed by daily regimens of IV meds, pills and doctor's appointments.   

SIGNS OF LIFE
Oct 2013 - May 2014

Finally began to see sustained levels of progress with fewer setbacks. Parker was able to walk more steadily for longer periods of time and with less pain. Then came that first epic trip in which he traveled to see his LLMD without his wheelchair! As the months progressed, he was finally able to ditch his wheels for good! He began intensive physiotherapy to rehabilitate his body.

REMISSION and RESTORATION!
Summer 2014 - January 2015

Parker, Train Wreck Trail, Squamish, BC, Summer 2014

It's official: Lyme is in remission! He is slowly weaned off of all his medications. He begins the process of re-integrating into life!  

He returns to school! He was so excited and nervous. The last time he was in school he had been in grade 5 - he was now in grade 10! Talk about a steep learning curve. Yet his transition went remarkably well! He made friends, had sleepovers, and hung out. 

He made his high school basketball team! The goal of playing varsity basketball was a dream he had held on to through his long years of illness!

He discovered new interests: long-boarding and mountain biking. His Dad, who has run a mountain bike club in local high schools for 15 years, was elated! Parker proved to be a natural rider - effortlessly ripping single track on trails all over the lower mainland - from the North Shore to Whistler. He easily blew past dad, leaving him to eat dust.

Parker - Killing it in Whistler, BC, Summer 2014

During this time, we still found ourselves caught off guard just seeing him effortlessly walk into a room, so the sight of him on a bike or on the b-ball court felt completely surreal. It was a miraculous sight to behold!

ON TOP OF THE WORLD
January 2015

In January 2015, he went on a four day back-packing trip with his class to Tetrahedron Park (near Sechelt, BC). He was one of three students who completed the climb up Mt Steel (summit 5400+ feet).

Parker and classmates on top of  Mt. Steel, January 2015

He came home pumped and looking healthy and vibrant after this mountain-top experience. Through the long dark years of his illness, we had always held on to the hope that he would recover but never in our wildest dreams had we ever anticipated his recovery would be so full and complete. We finally felt it was 'safe' to exhale and fully embrace his recovery. We were all on top of the world!

Three days after the trip, he got sick. We hoped it was "just the flu" but as the weeks passed and we once again watched our son deteriorate that hope faded.

RELAPSE
March 2015 to present

"We are stumbling numb through a twilight zone we dared to believe we'd left behind - how do you even find the words to explain the devastation of relapse." ~ Sparky's Mom (excerpt from "Reality of Relapse" blog post, March 2015)

In March 2015, his relapse of Lyme and Babesia was officially diagnosed by his LLMD in California.

Since January 2015, aside from a handful of days, he has been essentially house -bound. Most days it is a struggle just to get from his bed to the couch. He is no longer able to attend school. In the five months since Parker relapsed, he has received one get well card and a few cherished emails. We can count on one hand the number of visitors he has had. He feels very alone and forgotten.

GOING THE DISTANCE!

We know he is loved and prayed for but, for whatever reason, those sentiments rarely make the transition from thought to action. Practical helps and physical presence is sorely lacking for him and our family).

Why? That's a question we often ask. Is it a case of "out of sight, out of mind"; or not believing the patient is as sick as they say they are; or is the withdrawal simply because folks just don't know what to do or say. Whatever the reason(s) - the silence is deafening and the retreat is deeply wounding. It is challenging to help our son process this when we ourselves do not understand it.

For years, the only wheels Parker rode were attached to a chair.

This is a delicate and difficult part of the journey to share. Being vulnerable is risky.

Parker would never ever want to be pitied. We felt it important to acknowledge this part of his journey because this troubling aspect of Lyme is not unique to our family. Feeling isolated and abandoned by family and friends is an all too common experience in the Lyme community. The road to recovery is a long and arduous one. Very few friends and even family members have the stamina to go the distance. 

Daniel and Tanner, this is exactly why we believe your Ride for Lyme means so much to so many.

You guys are going the distance for each and every one of us that has felt pushed aside, forgotten and abandoned. 

Today, as you specifically ride in Parker's honor, he will see love in action. He will know his story matters because two men he has never met are going the distance for him. As he sees the pictures of you on your bikes, he will know that his pain and suffering are being carried across Canada in your hearts and legs. 

Daniel and Tanner, your ride is love in action. Thank you from the bottom of our hearts! Thank you for going the distance for our Sparky boy, Parker. Thank you for going the distance for all of us. For Lyme. For Hope. 

Ride on, Ride for Lyme, Ride on! 

With immense gratitude and appreciation,
The Goertzen Family
Graham & Shannon
Taylor, Parker, Avery & our fur-baby, Harrison #lymepooch